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World Pulmonary Hypertension Day

World Pulmonary Hypertension Day is an annual global event to raise awareness of pulmonary hypertension (PH), a severe condition affecting the lungs and heart.

On May 5, more than 80 organizations around the world will participate in World PH Day activities to raise awareness of this frequently misdiagnosed disease and celebrate the lives of people living with PH.

Organizing an event this year? Enter your event information in our World PH Day calendar and share on the World PH Facebook and Twitter pages. You can also share photos of your World PH Day activities directly on Facebook or Twitter using the #WorldPHDay hashtag.

Update your social media profiles and share awareness graphics for World PH Day.

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FACEBOOK FRAMES

You can add one of the official World PH Day 2019 Facebook frames to your profile picture to celebrate World PH Day!

Learn more

Desktop

1. Go to www.facebook.com/profilepicframes.

2. Select a frame from the menu by searching “World PH Day 2019”.

3. Click Use as Profile Picture to save.

Mobile

1. Go to your Facebook Profile Page.

2. Click on your profile picture, then select Add Frame.

3. Select a frame from the menu by searching “World PH Day 2019”.

4. Click on the desired frame below, then click Save in the top right corner.

Pulmonary Hypertension Affects People of All Ages, Everywhere

Use these photos raising awareness about the five types of PH or download social media graphics in our toolkit.

World Health Organization (WHO) Group 1: Pulmonary Arterial Hypertension (PAH)

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To post about this on your Facebook or Instagram, visit the World PH Day 2019 Toolkit.

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To post about this on your Facebook or Instagram, visit the World PH Day 2019 Toolkit.

PAH can be idiopathic, heritable, developed in association with congenital heart disease or liver disease, induced by drug or toxins such as certain diet pills or methamphetamines, or related to connective tissue diseases such as lupus or scleroderma. Globally, a leading cause of PAH is schistosomiasis.

An estimated 20 million people, mostly in Africa and Asia, develop a severe form of PH from schistosomiasis, a common parasitic disease in which the parasite’s eggs obstruct the pulmonary arteries. Schistosomiasis-related PH is the most common cause of PH in the developing world.

Citation: Papamatheakis DG, Mocumbi AO, Kim NH, Mandel J. Schistosomiasis-associated pulmonary hypertension. Pulm Circ. 2014;4(4):596–611. doi:10.1086/678507

World Health Organization (WHO) Group 2: Pulmonary Hypertension Due to Left Heart Disease

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To post about this on your Facebook or Instagram, visit the World PH Day 2019 Toolkit.

In economically developed countries, PH is most often seen as a common complication of left heart disease, which affects at least 26 million people worldwide. Problems with the left side the of the heart, such as valvular heart disease and systolic or diastolic dysfunction, can lead to a backup of blood returning from the lungs, causing pressures in the lung to rise.

Citation: Savarese G, Lund LH. Global Public Health Burden of Heart Failure. Card Fail Rev. 2017;3(1):7–11. doi:10.15420/cfr.2016:25:2

World Health Organization (WHO) Group 3: Pulmonary Hypertension Due to Lung Disease

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To post about this on your Facebook or Instagram, visit the World PH Day 2019 Toolkit.

Chronic high altitude, chronic obstructive pulmonary disease (COPD) and sleep-disordered breathing (sleep apnea) are some of the underlying causes that lead to scarring in the lungs that can cause PH. More than 140 million persons worldwide live 10,000 feet or more above sea level.

Citation: Mirrakhimov AE, Strohl KP. High-altitude Pulmonary Hypertension: an Update on Disease Pathogenesis and Management. Open Cardiovasc Med J. 2016;10:19–27. Published 2016 Feb 8. doi:10.2174/1874192401610010019

World Health Organization (WHO) Group 4: Pulmonary Hypertension Due to Blood Clots in the Lungs

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To post about this on your Facebook or Instagram, visit the World PH Day 2019 Toolkit.

A rare and progressive form of PH, chronic thromboembolic pulmonary hypertension (CTEPH) is caused by blood clots in the lungs. Up to 4% of individuals who have had a pulmonary embolism go on to develop (CTEPH).

Citation: McNeil K, Dunning J. Chronic thromboembolic pulmonary hypertension (CTEPH). Heart. 2007;93(9):1152–1158. doi:10.1136/hrt.2004.053603

World Health Organization (WHO) Group 5: Pulmonary Hypertension Due to Blood and Other Disorders

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To post about this on your Facebook or Instagram, visit the World PH Day 2019 Toolkit.

Various disorders can cause PH in which PH is secondary to other diseases, including blood disorders, systemic disorders with lung involvement and metabolic disorders.

Sarcoidosis is an inflammatory disease that affects various organs and can lead to PH when increased pressure in the lungs causes weakening and ultimately failure of the right side of the heart.

Citation: Diaz-Guzman E, Farver C, Parambil J, Culver DA. Pulmonary hypertension caused by sarcoidosis. Clin Chest Med. 2008;29(3):549–x. doi:10.1016/j.ccm.2008.03.010

About

WHAT IS WORLD PH DAY?

Every year on May 5, pulmonary hypertension organizations and groups around the world participate in World Pulmonary Hypertension Day activities to raise awareness of this frequently misdiagnosed disease and celebrate the lives of people living with PH. World PH Day brings global attention to the importance of improving the quality of life and raising the life expectancy of the more than 25 million people living with PH worldwide.

GOALS

During the celebration of World PH Day, pulmonary hypertension organizations work to:

Increase awareness and understanding of the disease to promote early diagnosis. Early diagnosis is important in decreasing premature PH-related deaths.
Promote access to health care and treatments that increase quality of life and raise life expectancy.
Promote the concept of treating the whole PH patient, which includes treating their physical, psychological and social issues.
Promote research that will help find the cure for pulmonary hypertension.

Members of the pulmonary hypertension community worldwide also organize and take part in a wide variety of awareness-raising events, actions and celebrations.

HISTORY

In 2012, a program and a scientific symposium were held in Madrid, Spain as the first World PH Day celebration. The day was officially endorsed by 22 patient associations, 10 rare and affiliated disease organizations and eight scientific societies.

May 5 was originally chosen as World PH Day because it is the anniversary of the first child’s death in Spain from pulmonary hypertension as a result of toxic rapeseed oil more than 30 years ago. The May 5 date was upheld as World PH Day by popular consensus and because of events already planned worldwide.

Source: “Primer día mundial de la hipertensión pulmonar,” Asociación Nacional de Hipertensión Pulmonar, diamundial.hipertensionpulmonar.es

What is PH?

What is pulmonary hypertension (PH)?

Pulmonary hypertension is high blood pressure in the lungs. It’s different than the blood pressure that your doctor measures with a cuff. When a person has PH, the arteries in the lungs become damaged, narrow or stiff, putting pressure on the right side of the heart as it works extra hard to push blood through. If left untreated, PH can lead to right heart failure and death.

What are the symptoms of PH?

People with PH can experience symptoms such as shortness of breath, dizziness and fatigue. Because these symptoms can mirror common, less-threatening illnesses, patients often go years without being diagnosed, or are misdiagnosed as having other illnesses such as asthma or COPD. With early and accurate diagnosis, proper treatment can extend and improve PH patients’ quality of life. People who think they might have PH should seek diagnosis and treatment from a PH specialist. Other symptoms include chest pain, fainting, swelling of the arms, legs, ankles or abdomen, dry cough and Raynaud’s phenomenon.

Who gets PH?

There are risk factors that can make some people more likely to get PH, but anyone can get PH. It affects children and adults, men and women and people of all races and ethnic backgrounds. PH can exist alone or be associated with other conditions such as connective tissue disorders (scleroderma, lupus and others), heart disease, HIV and COPD. While there is no cure for PH, people diagnosed with one form called chronic thromboembolic pulmonary hypertension (CTEPH), caused by old blood clots in the lungs, may be candidates for a surgical procedure that can potentially reduce or normalize their lung blood pressure.

Learn more at www.PHAssociation.org.

Toolkit

Throughout May, beginning on World PH Day, May 5, 80 global pulmonary hypertension (PH) organizations will participate in a worldwide awareness campaign to advocate for access to PH diagnosis, treatment and care.

Organizations will share photos, stories and social media messages linked by an image of a heart globe – the 2019 World PH Day campaign symbol. The heart globe logo symbolizes unity and the need for greater awareness of the disease. The image was the choice of representatives from PH associations around the world.

The Pulmonary Hypertension Association has designed a toolkit with easy-to-translate English-language materials you may use to participate in the World PH Day campaign. From May 5 – May 31, please use the contents of this kit to:

Encourage people to photograph themselves with a PH awareness message.
Change your social media profile and cover photos to the 2019 World PH Day images (below).
Share and repost participating organizations’ World PH Day campaign posts.
Adapt the news release template for your organization.
Post the World PH Day graphics included in this kit (below).

Social Media Graphics

Facebook Banner

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Profile photo

Social Media posts

Facebook and Instagram Posts

Schistosomiasis

Instagram: Have you heard of schistosomiasis? It’s a common parasitic disease in which the parasite’s eggs obstruct the pulmonary arteries and is the most common cause of pulmonary hypertension (PH) in the developing world. An estimated 20 million people worldwide mostly in Africa & Asia, develop a severe form of PH from schistosomiasis, which can be contracted through contact with freshwater. #WorldPHDay2019

Facebook: Today is #WorldPHDay2019 and we are making sure you know the signs, symptoms and risks for pulmonary hypertension (PH) worldwide. One of the ways people develop PH throughout the world is via complications from other diseases. For example, have you heard of schistosomiasis? It’s a common parasitic disease in which the parasite’s eggs obstruct the pulmonary arteries and it is the most common cause of PH in the developing world. An estimated 20 million people worldwide, mostly in Africa & Asia, develop a severe form of PH from schistosomiasis. It’s most frequently contracted via contact with freshwater. Those who use freshwater for activities such as drinking, bathing, washing or leisure can be at risk. Make sure you know the symptoms: visit WorldPHDay.org

Left Heart Disease

Instagram: Left heart disease (LHD) can be caused by coronary artery disease, high blood pressure, faulty heart valves and other damage that makes your heart work harder to pump blood, weakening it. Fatigue, swelling in your legs and feet, rapid or irregular heartbeat, reduced ability to exercise, persistent cough or wheezing with white or pink blood-tinged phlegm are all signs of LHD. #WorldPHDay2019

Facebook: In economically developed countries, PH is often seen as a common complication of left heart disease (LHD). LHD occurs when the heart is weakened over time by working too hard due to coronary artery disease, high blood pressure, faulty heart values or damage to the heart muscle. Fatigue, swelling in your legs and feet, rapid or irregular heartbeat, reduced ability to exercise, persistent cough or wheezing with white or pink blood-tinged phlegm are all signs of LHD. Here’s where to find help recognizing the symptoms that may put you at risk for PH associated with LHD. WorldPHDay.org

Lung Disease

Instagram: Even where you live can put you at higher risk of developing pulmonary hypertension (PH) if it’s a high-altitude location. #WorldPHDay2019

Facebook: Whether in between tasks or at the end of a long day, people from all ends of the earth need sleep to rest. Sleep-disordered breathing, like sleep apnea, can cause pulmonary hypertension (PH) due to scarring in the lungs. This is one of the many reasons that PH is a global health concern. PH can affect anyone of any age, race or ethnic background. Even where you live can put you at higher risk of developing PH. More than 140 million people worldwide live 10,000 feet or more above sea level. This puts them at greater risk for developing PH due to constriction of blood vessels, resulting in increased strain on the right heart over time. Learn more about how PH can impact you where you live. WorldPHDay.org

CTEPH

Instagram: CTEPH is a rare and progressive form of pulmonary hypertension (PH) caused by chronic blood clots in the lungs that become scar-like tissue blocking or narrowing the pulmonary arteries. A pulmonary thromboendarterectomy (PTE) procedure is typically performed to remove the clots that form in the lungs. #WorldPHDay2019

Facebook: Chronic Thromboembolic Pulmonary Hypertension (CTEPH) is caused by chronic blood clots in the lungs that become scar-like tissue blocking or narrowing the pulmonary arteries. CTEPH can be a cause of persistent shortness of breath that is otherwise unexplained. 1 in 25 of the 600,000 people who suffer pulmonary embolism each year could develop CTEPH. A pulmonary thromboendarterectomy (PTE) procedure is typically performed to remove the clots that form in the lungs. CTEPH can affect anyone so make sure you know the signs and symptoms by visiting WorldPHDay.org

Sarcoidosis

Instagram: Sarcoidosis patients who experience persistent, labored breathing should get screened for the presence of pulmonary hypertension (PH). Sarcoidosis tends to affect the African American population most commonly, with about 34 cases per 100,000 people. The cause of sarcoidosis remains unknown. #WorldPHDay2019

Facebook: Pulmonary hypertension (PH) is considered a serious complication of sarcoidosis. Sarcoidosis tends to affect the African American population most commonly, with about 34 cases per 100,000 people. The cause of sarcoidosis remains unknown. Sarcoidosis patients who experience persistent, labored breathing should be screened for the presence of PH. Make sure you know the symptoms. WorldPHDay.org

Visit World PH Day’s Facebook and Twitter pages.

World PH Day Partners

PARTICIPATING ASSOCIATIONS

The following organizations participate in World PH Day:

This site is managed and maintained by the Pulmonary Hypertension Association, the European Pulmonary Hypertension Association and la Sociedad Latina de Hipertensión Pulmonar.

If you are participating and would like to add your association to this list, please email your association details and event information to International@PHAssociation.org.

For contact information of PH associations around the world, see the list of associations.